A young girl’s diagnosis prompts life of philanthropy

Published: Thursday, July 5, 2012 at 7:26 a.m.

Last Modified: Thursday, July 5, 2012 at 7:26 a.m.

For the past two weeks, Wilmington has played host to a special guest. She's only 10 years old, but is determined to make the most of her trip from Colorado. She has seen the beach and gone to a local play like many tourists might do. But she's no ordinary visitor.

Her name is Ellie White, and she has a rare genetic disorder called Wolfram syndrome. The condition, which causes diabetes and other symptoms, currently has no cure. Little is known about it by the medical community.

Members of the Wilmington community, however, have been inspired to fight back against Wolfram syndrome and other genetic disorders. Billy Mellon, owner of downtown restaurant Manna, has arranged to hold a fundraising event at 128 South on Friday for the Ellie White Foundation for Rare Genetic Disorders. He has arranged for food and drinks, as well as the items for a silent auction, to be donated.

"No one is making any money," Mellon said. "Everything is going to the charity."

For Ellie's family, being in a beach town is no coincidence.

"When you find out your kid has something like this, it's like having a crystal ball," said Ellie's mother, Beth White. "We know what her future is going to be like. We have a limited time to have her see what she can see and hear what she can hear."

Wolfram syndrome is known to affect the brain stem and central nervous system. The average life expectancy for someone with the condition is less than 30 years. Still, Ellie's story is one full of hope and inspiration.

"Even though she's losing her hearing and vision, she can dance. On ‘America's Got Talent' even," White said.

Ellie's team, The Silhouettes, won second place in 2011. Their popularity gave Ellie a platform to explain her disease to the world.

The talent show has been one way to raise awareness, but Ellie's efforts have not stopped at that.

"When she was 6, she had the idea that the Juvenile Diabetes Research Foundation have a walk instead of a fundraiser," Beth White said. "She said instead of having a birthday party, she wanted people to not give her presents and donate to JDRF instead."

Ellie has done the walk each year since then, raising more than $30,000 for research.

Inspired by Ellie's condition and determination to raise awareness for genetic disorders, independent film producer Jocelyn LeRoux has offered to film a documentary about Ellie.

"Fundraising is going to become a permanent mission of the foundation," LeRoux said. "We are especially grateful for any money that we can raise right now."

Beth White, a geneticist at the University of Colorado at Denver, has been on the board of the JDRF since Ellie's diagnosis. She hopes that her daughter's foundation will raise enough money to fund independent scientists.

"We were just going to call it the Wolfram Syndrome Foundation, but we decided to put her name in it," White said. "It's going to be her legacy, (because) it's going to outlive her."

<p>For the past two weeks, Wilmington has played host to a special guest. She's only 10 years old, but is determined to make the most of her trip from Colorado. She has seen the beach and gone to a local play like many tourists might do. But she's no ordinary visitor.</p><p>Her name is Ellie White, and she has a rare genetic disorder called Wolfram syndrome. The condition, which causes diabetes and other symptoms, currently has no cure. Little is known about it by the medical community. </p><p>Members of the Wilmington community, however, have been inspired to fight back against Wolfram syndrome and other genetic disorders. Billy Mellon, owner of downtown restaurant Manna, has arranged to hold a fundraising event at 128 South on Friday for the Ellie White Foundation for Rare Genetic Disorders. He has arranged for food and drinks, as well as the items for a silent auction, to be donated.</p><p>"No one is making any money," Mellon said. "Everything is going to the charity."</p><p>For Ellie's family, being in a beach town is no coincidence.</p><p>"When you find out your kid has something like this, it's like having a crystal ball," said Ellie's mother, Beth White. "We know what her future is going to be like. We have a limited time to have her see what she can see and hear what she can hear."</p><p>Wolfram syndrome is known to affect the brain stem and central nervous system. The average life expectancy for someone with the condition is less than 30 years. Still, Ellie's story is one full of hope and inspiration.</p><p>"Even though she's losing her hearing and vision, she can dance. On 'America's Got Talent' even," White said.</p><p>Ellie's team, The Silhouettes, won second place in 2011. Their popularity gave Ellie a platform to explain her disease to the world. </p><p>The talent show has been one way to raise awareness, but Ellie's efforts have not stopped at that. </p><p>"When she was 6, she had the idea that the Juvenile Diabetes Research Foundation have a walk instead of a fundraiser," Beth White said. "She said instead of having a birthday party, she wanted people to not give her presents and donate to JDRF instead."</p><p>Ellie has done the walk each year since then, raising more than $30,000 for research.</p><p>Inspired by Ellie's condition and determination to raise awareness for genetic disorders, independent film producer Jocelyn LeRoux has offered to film a documentary about Ellie. </p><p>"Fundraising is going to become a permanent mission of the foundation," LeRoux said. "We are especially grateful for any money that we can raise right now."</p><p>Beth White, a geneticist at the University of Colorado at Denver, has been on the board of the JDRF since Ellie's diagnosis. She hopes that her daughter's foundation will raise enough money to fund independent scientists.</p><p>"We were just going to call it the Wolfram Syndrome Foundation, but we decided to put her name in it," White said. "It's going to be her legacy, (because) it's going to outlive her."</p><p>Features: 343-2343</p><p><a href="http://www.starnewsonline.com/section/news41"><b>Twitter</b></a>: R_DelCampo</p>